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Anyone have problems from family members on having the surgery?

PrincessGrammyPPrincessGrammy Posts: 15
edited 06/11/2012 - 8:47 AM in Back Surgery and Neck Surgery
This is going to be my 2nd surgery and my daughter gave me a hard time last time, she is 35, married with 2 small babies, 26 months and 7 months. First surgery was 10 yrs ago. She keeps trying to get me to put the surgery off as long as possible, then she wanted a 2nd opinion, which I was willing to go for. Well so far my Fam. doc cannot find anyone who will do a 2nd opinion, then one neurosurgeon said he does not do scoliosis, so this has been going on for 3 weeks while I sit in limbo. I just had an MRI last week. The MRI was ordered after I went to the ortho surgeon, (he ordered it) so I would like to call and set the date for Dec 1, if it is still available, but wanted to wait until after the 2nd opinion Dr. So I told my daughter, who is a Nurse Practitioner and works in the same office as my fam, Doc, that if they did not find anyone by Wednesday, to forget it, I wanted to set the date. That is when my DD said oh don't ya want to put it off as long as possible, so I had to explain to her the pain I am in. It does come and go and I did just have a really good weekend, I cooked soup and made a home made apple pie and I did not have to sit down all the time and my leg did not turn numb. But this not being my first rodeo, I know this pain comes and goes, and I also can hardly move once I lay down and I have a hard time getting out of bed, anyway sorry this got so long, but I wanted to know if anyone else has had trouble and how did you handle it? I know she is speaking out of fear, but still....when she says stuff like, you could end up worse than you are now, surgery is not 100%, if confuses the hell out of me. (sigh)


  • I hope I placed this in the right place, I am having a hard time navigating this forum yet.
  • You found a great place. I've had a similar reaction from family before my microD. Some of it I blame on people just wanting to have an opinion. Those are the know it alls who tell you "xxx had that surgery and it didn't work" or they tell you that they saw a show......you get the idea.

    The rest, and usually those closer to you, have a problem with surgery because it will inconvience them. Either because they will have to take over what you do or they will have to take care of you. Or your recovery will interfear with their plans.

    First I would consider what reason might be causing your daughter to discourage surgery. Do you care for your grandchildren? or do you do other things for her or her family?

    If that isn't a factor then think about the surgery itself. Are you in good condition to go into surgery? Is your pain really bad enough to risk surgery? ANd is the surgery really going to help?

    You don't mention what you are having done or what your symptoms are. If you can share that you might get some advice from others who have similar problems. A second opinion is always a good idea. Why is it so hard to find another doctor?

    Hope this helps. And again welcome to a great forum.
  • Well I do babysit my granddaughters and now they will have to go into Daycare, something neither if us ever wanted to happen. I quit a good job to stay home to babysit them, so of course she will have to wake up earlier and pack them up, drop them off..her husband may take a turn too but he leaves for work so early. They both live about an hour from their jobs something they have tried to make different since having kids. I drive 27 miles everyday to their home, they are trying to sell their home, to move back here where we live, and if they were already living here that would be a lot more convenient for everyone.
    But she did not have kids the first time, I think she is frightened, knowing too much but not knowing enough.

    I had my upper spine fused in 2000 for scoliosis, and now the lower part of my spine has sort of broken down, bone on bone, lots of arthritis, numbing legs, cannot move very well once I lay down. Some days are worse than others, the last 2 weeks it has been pretty good as far as pain is concern, but you never know day today. When the pain first started this summer I was in severe pain, could hardly walk from the bed to the bathroom, but that has settled down after about 6 weeks of that. Numbness in my legs has been going on for about a yr. but that even settled down, the last few days, never know when it will start again.

    I saw an ortho guy who works for the same company as my daughter and my fam Dr. does. So when my Daughter wanted me to get a 2nd opinion, they (my doc and my daughter) decided I should see a Dr. out of their company, and I should see an nuro Dr. this time. But in the meantime the fam doc said I am not a candidate for a less invasive surgery, and surgery was the only way out of this. So anyway they are looking for a Dr at Barnes Hospital in St. Louis, I live half way between Springfield, IL and St Louis MO. Not sure why they cannot get someone, but these nuro surgeons will not take a patient if the patient calls, you need to have a referral from a fam. Dr. But they have been trying for 3 weeks now, and I am getting more and more nervous about it all, and I think mostly due to the fact I do not know what is going to happen when, I am one of those ppl. who have to have things planned out.
    So I hope that explains it, I am not good on condensing this stuff..sorry.

  • I would hate to think she's just not wanting to put her kids in daycare.

    I'd rather think she is concerned about possible complications, and not as confident as you are about the outcome. I know you are in pain (I am too, it sucks), but what odds did your doctor give you that this surgery would give you a significant improvement in pain level? How many of these surgeries has he done in the past, and how many of those people had significant pain improvement?

    That's what I'd use on her. If she's an NP, she thinks research and numbers, so use that.

  • Well it sounds like you know what's going on. It's hard to put yourself first but sometimes you have to. I'm sure the grandkids are a huge consideration. But on the otherside of that what happens with them when you have a really bad day?

    How many levels are you talking about fusing? I'm sure having the upper spine done is impacting the rest. Does the surgeon have a long term plan? I would think that there would be more issues down the road. And this may be your daughters concern.

    Definately get a second opinion. Not sure why they are pushing for a NS unless you are having nerve issues. If I were you I would be more concerned about stability and would think an OS would be better. Can't hurt to talk to both. You can only learn more with each consult.
  • I too think a 2nd opinion would be great, and I thought about telling my daughter tomorrow to have them see about an ortho guy too. I have taken care of them (the babies, 26 months and 7 months) when I was having a bad day, I just suffer and try to make it through, my husband goes with me about once a week to give me a break and I have Friday, Sat and Sun, I do not babysit, well sometimes I do when they want to go out, which is not too often, but I am the only babysitter they have.
    I do not remember anything about the medical terms he uses, he said I had bone on bone and that is the pain I was feeling. Why it goes into remission at times I am not sure, but when I am feeling well, it is hard to think about having the surgery, but when I have a bad day, it makes it alright.
    They told me this is very common for the rest of the spine to go bad, (it has shifted forward and sideways) they say it is due to the the upper spine being stabilized, it puts pressure on the lower spine, that and being overweight has not helped I am sure.
    Waiting is an option I guess, but then I may have days of pain, days where I cannot walk very far, then what? And waiting makes me older...oh I do not know. I had a pretty good outcome last time, it was a very grueling surgery last time, I am cut from my upper back, down around my side and over to my navel, the scar is about 22 inches long. Then of course the 8" scar on my hip where they scraped bone. Not to mention they took a rib last time, this time he said he would cut straight down my back. From about middle of my back to the butt crack, and they also will fuse it over the old fusion to stabilize it and then also screw it to my pelvic bones to anchor it. He has been doing this surgery for 8 years I think he said.
  • That's a biggie but you've had worse. It's so hard to know when the right time is. Get the other opinions and then decide.
  • Sorry to hear you're needing surgery and hope you get a second opinion. It would be great if your daughter could sell her house and move closer to you so it would be easier for you in the long run. Has she considered maybe a Nanny agency? Don't know if it costs more than putting the kids in daycare? I hope everything works out for you. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I am sure your daughter is just wanting the best care for you. I am a nurse also and sometimes knowing so much about the medical field can make you pause. It took me 4 years to get my lumbar fusion because I knew too much about it..lol

    I had taken care of patients on the floor immediately post op and they were in pain..I didn't want to experience that...It scared me off for far too long. At times I wished I didn't know so much about healthcare.

    I know that most people on here will agree that a 2nd opinion is a good idea. I found a neurosurgeon that worked in my hospital. I trusted him, I knew he had a great reputation. I didn't need a 2nd opinion.

    I agree with you that your daughter just doesn't understand the pain you are in. If she could experience it for 1 day she might change her turn about holding off surgery.

    Good luck
  • Thank you everyone, I am sure my daughter just wants the best for me too, but I just do not know what to say to her or how to handle it. they finally found an ortho guy in St. Louis who agreed to look at my xrays and stuff, to decide if he will see me, and the last Dr. was the same way, and he took me in, so I suspect this Dr will too, the thing is they are so busy it might take a while, and the pain is making me tired, although like I said the last 3 weeks have been better, not sure why, I am sure it could not have healed itself, there is bone on bone and it has shifted sideways and forward also, I do not anticipate it moving itself back anytime soon...LOL But yes a 2nd opinion will be a good thing to do.
  • My family was against me having back surgery, Now i wish i would have taken there advise. Yes surgery can make a person worse in some cases as it did with me. You mentioned bone on bone with your back' from what i understud in some cases it will cause a natural fusion when bone fuses together and for some it works out beter then surgery' Just a thought' good luck; Alex
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • SpineAZSpineAZ WiscPosts: 1,084
    Families can be worried for your, worried for themselves or just not understand. I met a nurse practitioner who never understood pain until she had a herniated cervical disc which caused pain (searing nerve pain) nearly constantly. Many people in our lives have experienced pain but on a brief basis. Of it it lasted longer it wasn't all encompassing. So they don't get the way chronic pain weighs you down. It's not surgical pain that you know will go away such as when you have your appendix out. It's pain that becomes an every day struggle.

    2 ACDFs, 2 PCDF, 3 LIFs; Rt TKR; Rt thumb fusion ; Lt thumb arthroplasty; Ehlers Danlos 
  • As in, " What if it makes you worse than you are now?" Problem is that he really could not see how he could be much worse than he was and he just did not want to end up in a wheelchair. But I admit that I had doubts and I prayed a lot while we waited and read a lot also. His surgery has turned out well and he is so glad he had it. But your daughter is probably afraid that you might be worse and that is understandable also. A second opinion is very valid- for us, it was anyway as the first surgeon said he could do nothing.
  • I now have an appointment to get that 2nd opinion in Nov. I really wanted to have the surgery Dec 1, I had myself psyched up for that, but oh well, I guess it will be after the New Year which is OK. I guess I will go from there, and in the meantime, buy some more silk gowns so I can slide over to the edge of the bed and get up somehow! As one of my BFF pointed out today, is the kids don't always get it, due to us being Mom's and trying to hide the pain and still keeping up with the family, so they won't suffer. And that is exactly what I have been doing, there have been many days when I do not feel good enough to babysit 2 small babies, but since we have no back up babysitting in place and I hate hate hate asking anyone to do stuff for me, as in asking hubby to go for the day, since he is semi-retired, but I don't like to bask him to give up one of his days...so of course I keep on going and keep it to myself. But this summer when the pain was really bad, my DD asked me if I was sleeping OK, that I looked worse and worse each day I came to babysit, and I said at that time, well I am in a great deal of pain hon, I have to struggle to get here. She offered to put the kids in Day Care at that time for how ever many days a week I wanted or all of them, and I said no, I just hate to see them go into Day Care myself. Once they are dropped off at Day Care there will be no relative within 30 miles of them. I hate that part. (sigh) So I guess I am in limbo again until Nov 12th I think it is...I am calling them tomorrow to confirm everything up.
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